Shanal Kumar

and 2 more

Background Cystic fibrosis (CF) related diabetes affects up to half of all adults with CF and is associated with higher morbidity and mortality. Our aim is to co-design an ideal model of care that integrates diabetes technology and better meets the needs of adults living with the condition to improve attendance, engagement, service satisfaction and clinical outcomes. Methods Using qualitative research methods, we evaluated disease perceptions, barriers and enablers to optimal CF-related diabetes management and service delivery. Integration of continuous glucose monitoring (CGM) was also explored. An initial broad purposive consumer survey was followed by focus groups with end-users. Grounded theory approach was utilized with major problem-areas identified then explored, coded and grouped into requisites for an ‘ideal model of care’ for adults living with CF-related diabetes. Results Two key themes emerged i) CGM was acceptable for use in adults with CF-related diabetes with many perceived benefits and should be integrated into the model of care, ii) an ideal model of care consisted of a dual-specialty service co-led by endocrinology and CF physicians and supported by diabetes nurse educator and CF dietitian with a goal to provide consistent and personalized diabetes management. Barriers to optimizing glycaemic control included diet, finger-prick testing, reduced access to CGM and pulmonary exacerbations. End-user feedback on CGM was overwhelmingly positive with regards to user operability. CGM was also identified as a tool that could be used to engage, educate and empower adults living with CF-related diabetes and facilitate constructive and personalized clinical decision-making by healthcare providers. Conclusion For adults living with CF, a diagnosis of diabetes is associated with increased treatment burden. End-users agreed CGM had many benefits and should be integrated into an ‘ideal model of care’ for CF-related diabetes that was co-led by endocrinology services integrated within a pre-existing CF service.